Hand me the Ice: Occipital Neuralgia

I never had a headache as a child.  Not as a teenager either.  Honestly had no idea what a headache was even like. 

Then around the time I was 23, I started having them.  And not casual little headaches.  Migraines and tension headaches.  Debilitating pain.  I have worked in Early Childhood Education for about 30 years now and needless to say, it ain't quiet work.  I remember vividly, the first time I had a multi-day one, 8 days long.  I wore black sunglasses to work every day, all day. 

I used to be awake all night and ice has always been my friend.  I remember Grant sitting up with me for a while one night as I described to him what I thought would be the best thing in the world.   I could visualize it so clearly.  A motorcycle helmet.   And it would somehow be filled with either gel or liquid that you freeze and then you just put it on and your entire head is enveloped in the cooling bliss that is ice blocking the pain. 

Over the years, I have seen neurologists, I have attended migraine support groups, I have taken meditation, tried accupuncture, naturopathic treatments, written headache logs, prescriptions for imitrex, fiorinal, demoral and more. Once I became a mom, I never wanted to be out of it if my baby needed me so I switched to tigerbalm, aveda blue oil and of course my old friend, ice. 

At the very beginning of November 2017, I had a brutal headache.  The pain is soooooo difficult to describe.  The consistent non-ending pain lasted 117 days in a row.  I went to a conference in Atlanta with it.  I curled up in a ball in a dark corner in the venue trying to get a break to be able to go see the next presenter.  I went to emergency at the hospital several times. And my TMJ specialist gave me some pain meds that would give me brief moments of respite.  That one headache ended when I advocated for myself at emerg again by saying that someone suggested occipital neuralgia (O/N).  See each time I went to the hospital, they gave me IV pain meds that really did not do anything. 

Let me try to describe the pain, first off you have to know that your entire head hurts.  It feels very very heavy.  Your neck hurts and possibly your shoulders as it feels like you can hardly hold your head up.   While the whole head hurts, the worse is that there is a very very very tight band that feels almost like metal that encircles your head at the edge of your hairline.  Take your fingers and run them along the top of your neck where your hair starts and follow that up the sides and over along your ears and then along to the front across your forehead.   Imagine that soft touching causing tremendous flinching pain.   Imagine that the moment your fingers slide up behind your ears, you feel woozy and an urge to vomit.  Imagine the room spinning when you move your head, whether up or turning it.  The pain being so bad that you sometimes find drawing in a deep breath intensifies the pain. 

So at that emerg trip, I told the doctor that I thought it might be O/N.  He listened and then told me he really did not think so.  I told him that I certainly did not think I was a doctor but that I was trying in vain to figure out what it could be.  He had me hooked up to an iv and same pain meds as before began dripping in.   As it was almost finished he came in and looked at me and said you must feel a lot better now.   I looked at him sadly and said I feel the exact same.  He appeared both surprised and perplexed.  Well, he said, we could try the injections for O/N.  It might help.  So off he went to get it.  He explained that it would hurt.  It would burn. I did not care in the least.  He got the needle ready (as it goes in back of head I could not see it) and he said he had to locate the exact spot so he began to gently feel and prod and as he did this I (in all my large woman capacity) jumped off the table.  I was sitting and my body reflexively bolted upwards.  He looked at me and said well that pretty much confirms that diagnosis.  He put the medication in via needle and it hurt and it burned and I did not care.  He then went to the other side to inject there and I flinched but did not jump anywhere near the same amount.  He said it appears that you have unilateral occipital neuralgia not bilateral but we are going to do both sides. 

He called me the next day.  I felt so much better.  The relief was quite apparent and lasted for a couple months.  He had warned me I would likely need this done every three months or so. 

Almost 3 months to the day, I was at another medical emergency department here in HRM and a Dr. Best gave me the injections.   First set of injections into both sides was freezing and then steroids in as well.  Another close to 3 months. 

Now I was not headache free during those months, but I was free of the never ending ceaseless agony.   I truly would not wish this pain on anyone and some people in my life have hurt me and then of course there are people in the world who have hurt lots of people and I would not wish it on them at all. 

So when it was time for the next set of injections, I found out Dr. Best left the province.  Apparently there are only a few ppl who will do it.  And going to emerg would be hit or miss (with more misses) to find someone to treat the pain / condition with these injections. 

So I have tried chiropractic, physiotherapy, dry needling (with some success) and also a type of massage therapy on the head that I call agony massage (with some success). 

I have been told about a pain treatment clinic that I am now seeking a referral too that can do regular nerve blocks for it. 

Currently it comes in waves from always bad to brutal.  The past week every day has been significantly more painful. 

Thank goodness for ice. 

Resolutions

So I have been of mind the past numerous years that resolutions are not necessarily a good thing...  Why should a random date said to be the beginning of a new year by people who we don't know be monumentous or significant enough to lead to change?  Could not any date be given the same power? 

I have not been kind to myself for sometime.  I have not felt worthy.   I have not taken care of myself.   I need to make changes. 

So I am going to write each day.  Nothing fancy.  Just something to grow myself.  To hear myself. To care about the feelings and person that I am. 

Today, what did I do for myself? 

I upheld the tradition that Nikki and I started several years ago and spent the day at the movie theatre.  Was this a deep meaningful personal growth sort of thing?  Nope.  But I enjoy movies.  I enjoy the sense of escapism they provide.  I enjoy the entertainment factor.  I like to ponder the act of crafting a movie, the act of portrayal of another person / role, the special effects.  I love all genres except that of horror.  It was a lovely fun way to start a new year.  A year that I plan to value myself. 

During these movies, I laughed.  Laughter is something I have always valued highly.  I have a tattoo of a quote that Liskie said to me daily.  "Mumma, Did you laugh today?"   I laughed today.   The uplighting feeling, the joy that bubbles up within with laughter is very fulfilling and people really need to live in those brief fleeting moments.  Sorror, sadness, etc. is not very fleeting.  They nest in us.  They make themselves comfortable and build a home.  They establish a root system.  Laugh every day to combat that.  Smile often.  Let the smile be real and authentic and permeate your being.  : )    It lifts your soul and that of the recipient. 

I spoke to my mom on the phone.  I spoke to both of my daughters on the phone at different times.   I heard each of them tell me they love me.  I told each of these people I love them.   I am trying to hear this and feel this.   I cuddled my animals and savoured the unconditional love we share. 

I ate a Barley toy / clear toy sucker that was given as a Christmas gift.  It was delicious and reminded of my childhood. 

I bought some fruit to eat as I want to provide myself with some actual nourishment.  My food choices are rarely nourishing. 

And I wrote. 

Heather, keep writing.